Thursday, March 26, 2009

MS and Me: A Life Bisected, and Dissected - Part Two

When I stopped working and went on disability, I realized that, in a very real way, I had experienced the death of the old able-bodied me, and was left to mull over the life that the old able-bodied me had led. The understanding that my life had been forever changed transformed the recollection of my healthy days into something of a time capsule, my memories like the curious remnants of a lost history.

I untangled the web of decisions and events that had defined the path my life had taken, and saw that many of the issues with which I'd most wrestled had very little actual impact on the direction of my life, while decisions that I'd made with barely a thought, like choosing to catch a later train, or stay for one more drink, or take the long way home, had proven time and again to have tremendous long-term implications. It turned out that many of the issues I thought to be of vital importance at the time were in reality relatively insignificant in the long run, and that issues to which I assigned almost no importance at all had been tremendously influential.

Now that it had been stolen from me, I was immensely struck by how precious a commodity time, healthy time, really is. Forget about gold, diamonds, fame, or power. The ultimate truth is that time is every person's most valuable possession. The fragility of the daily routine is almost impossible to see while you are caught up in it, but the knowledge that all you take for granted can be smashed in an instant should be the driving force behind every life.

I never, ever, expected to be diagnosed with multiple sclerosis at age 39. Me? That shit doesn't happen to me. After all, I'd been a world-class hypochondriac all my life. I'd courageously battled through imaginary bouts of leprosy, stomach cancer, brain tumors, and dengue fever. Didn't that somehow exempt me from getting a real illness? Hadn't I earned a cosmic get out of jail free card for all of my self-imposed misery? Was all that egocentric suffering in vain? Well, jackass, yes it was...

The fact is, none of the thousands of people each day who have their lives completely turned inside out by disease or accident ever had an inkling that their existences were about to be shaken to their roots. It may be trite to say that life should be lived as if each day may be our last, but there is no greater truth in the world.

Given good health, the potential to change one's entire destiny is bestowed upon each and every person the moment they wake up each day. The only influence that the past has on the present is the influence it is granted, and today is the only today you are ever going to get. Disease steals much of that self-determination away from us. Now, the patient is forced to put blinders on and focus on the fight ahead. While yesterday the choices had been infinite, at some point after getting a serious diagnosis, the menu becomes quite limited...

It was and is your life. Beautiful thing, the ability to review and improve. I've always been good at the "review" part, but struggled with the "improve", leaving so much of my life to chance. Maybe it's that loose focus that keeps me sane.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...